From my post on Thoracic Outlet syndrome since I come here and read so much. Wanted to share...


How is TOS life with the leeches of fibro, RSD, CRPS, CFS, HA's, visual and hearing disturbances et all, right? Wow, you know? Thats exactly how I have felt...like leeches sucking the livin' life out of me the last 3 months.

I have been around but not if that makes any sense?? Insurance co denied me all medical care since Sept, I have been laying low (literally) not to create higher pain without increasing the meds. The BP has sky-rocketed to stroke-out (160-190 / 98-110) crap, thats not me. Even though the pain has increased my very low BP over the last decade. Had 3 family deaths in 2 months and now my uncle in critical care with kidney failure?? What the heck is going on?

There was that glimmer of hope when I finally received my SSDI and retirement secondary ins after a decade. No happy dance by all means just a WOW, finally and a breath or was it exzasperation(?). Little did I know how significant the medical to my psyche and body meant. Finally had a scalene block, chemo denerviation, a little steroids, lidocaine and botox injected into and all around in the neck, scalenes, subscaps, traps, mandibulars. Asked him to do my whole body as the right side pain was so intense. I was in such bad shape. Now we can finally do the left side, inject my ulnar nerve, work on my lef leg paralysis, numbness in my toes and fingers, the sciatic, the headaches. Just the drive to UCLA was horrific. This was the bestest in the westest needle poking ever as it took less time to recoup. Physical therapy after the procedures has done wonders which of course ins never paid. Just doesnt make sense. You relax the muscles and then use PT to gain strength and ROM. How can they carry a shield dictating what is good or bad? DO I dare go there with this healthcare future? Thats why we dont get better. Of course you know none of this is a cure but it sure beats laying in bed 24/7 in off the chart pain.

Then...Master P and the BOD had a filled class of docs, therapists to teach about TOS and the chronic pains we deal with, how to catch it early, who to send the patient's to for quick dx, how much the mind, body and spirit is essential for the whole body to heal just like with cancer. I actually made it thru the weekend class with many breaks of personal PT. Well, one of the speakers was a accupunturist. I thought, naaa TOSers say it doesnt help. Maybe it would help with my blood pressure. So, I actually called, made an appt and she was at my house Monday night. She came highly recommended by docs & PT's. This eastern gal came, pitched a tent in my home with her table, fresh linens and sweet bedside manner. As I followed up with the TOS certified providers to let them know I did in fact make an appt. This is what I said...Just wanted to let you-all know I followed up with an acupuncturist after this weekends session. My BP has been really high lately along with fibro, chemical & chemo fog along with brain zapping, disorientation beyond what I have experience the last decade. So my BP was the first to fix...I cannot tell you how awesome this person was. Its hard to explain how I felt after. No meds, morphine has ever made me feel like I was walking on clouds with little pain My neck did hurt from being on the table. I was coherent with a wobbly relaxation which sent me straight up to sleep. Sleep, you say? Yep, actual sleep without meds. She explained I had so much toxic/acid build up from the years of pain she wouldnt even use the needles this time. She used her warm healing hands and moved all my organs, muscles, neck, occipital, head. She could even touch my arm nerves lightly after a while. I relieved my body of toxins 5 times during the night, a normal bowel movement which is unheard of with the Opiods and must of lost 10 pounds. My brain is sooo much clearer, BP is down and physical therapy has been going good as good can be all week. I will see her again next week and see where we can go from here as I am not giving up on anything that will give me some relief in coordination with Western medicine.


*For all, there are actions we can take to get us back into the living I am finding out. We just have to be willing to try no matter how hokey or non traditional we or the western medical field may think. Whatever works. And dont be afraid to like it! Just make sure professionals come well recommended and trusted by a handful of others. I will always be the first to try not just for me but for you-all to bring you hope. Its my job now as so many of you have been here on NT for me directing me to the right pro's. Yes, there is hope to be healthy as healthy as we choose to be.
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Last night was the second session with my new Eastern Medicine healing hands/accupuncturist. Did I mention she specializes in pain management? Still no needles. She’s working the entire system to bring blood flow;circulation back to the muscles, organs and brain. O my what a difference I am feeling. I would love to be able to just reach in and somehow express the difference in my system. And how I would like to afford twice a week from a decade of “swamp” but we will stick with once a week unless some miracle happens.

I was asked if it activates the RSD and fibro. Nope, not with me and I have been in a flare with this 100 degree heat.

Hi Cyndy,
I am so curous and interested in the results that people have who have pursued eastern or alternative treatment..it sounds like you are having great success with this..does your practitioner do accupressure (acupuncture without needles) and does she do a form of Reiki or touch healing?

I am so happy you are experiencing positive results! Iknow it is costly to have the treatments and ideally it would be great to have treatment daily!!!

I had about 6 sessions of acupuncture that the WC insurance had authorized and I remember I had horrible buring pain one night after work The acupuncturist gave me a treatment and half an hour later my burning had all but subsided...

I am going to try and get a referral from my regular doc for more acupuncture, as my case is WC and they didn't authorize any more..duh
By the way, someone with RSD sought out a doctor who guided her doctor through a treatment of leeching, (with medicinal leeches applied to her foot) she was able to toss her crutches after the treatment and healing time!!

Keep us posted about your treatments !! There is more than one way to approach dis-ease.
hope4thebest

w/c paid for accupuncture????? ur a lucky one

Love it...DIS-EASE

Yes, my practitioner is using accupressure right now instead of needles to release all the toxins, chemicals, moving, healing my organs, muscles and nerves for needed blood circulation from a decade of a crimped hose. Her hands are like she heated them on rocks. I usually cannot tolerate heat. It increases the swelling, throbbing and pain. She said she can tell the difference in my body by just touch. Shes amazing

I have received all you mention including hypnosis and guided imagery by certified practitioners, doctors and even physicians. I have also been subject to a 1 time energy balancing(?) without my knowledge at a class. I couldn't figure out where all this lightness, clarity and energy was coming from until I was told later. I was your true skeptic; laughed at all this eastern and alternative healing until a few years ago...Im learning so much

O and sleeping like a bear in hibernation. I dont remember, awakening to a soft body floating on air without rolling out of bed to the floor to start right into all the exercises and stretches from the nights pain.

Woa, Now leeches is another story...but whatever works I commend everyone who trys it. That tells me this person means business, cant take it anymore with all the western side effects. Good for her.

Now go urself some healing

Let me add my thanks as well for bringing this up.

Back in Year One of my RSD I was treated at the pain clinic of the largest private, non-profit hospital in Los Angeles by an Asian acupuncturist who was also an anesthesiologist, with a PhD to boot. Five weeks into a 2 - 3 times a week, six week protocol, in which I would lie back in a comfortably semi-darkened room, the doctor called it off, saying that it wasn't working.

Perhaps three years later, I was socially introduced to a highly respected photographer of Tibetan llamas, who gave me the name of his acupuncturist. I have regret for not following up on that one, on any number of levels, and the contacts/numbers have long been lost. And I now appear to be deteriorating more with each passing month. But the good news is that:

Cortical reorganization [has been observed to be] reversed coincident with clinical improvement. A reduction of CRPS pain correlated with recovery from cortical reorganization.

Cortical reorganization during recovery from complex regional pain syndrome, Christian Maihöfner, Hermann O. Handwerker, Bernhard Neundörfer, and Frank Birklein, NEUROLOGY 2004;63:693–701.

So there is always hope. There's just a matter of finding/getting access to something that works.

Mike

I tried acupuncture and acupressure all with a well known doctor, and it flared me up every single time. It made my rsd spread from the trauma of the needles. It relaxed me but my rsd deffinately didnt like it. If it is helping... WOW and keep going!!! Raise money!!!! I know alot of time doctors will give you a discount if they know that you are low on funds but will be coming x amount of times. Try and ask? It has helped me and I have done that with some of my doctors, after all they are here to help us!! Congrats on sleeping, i know MANY of us are jealous :P enjoy!!!

Hi All,
I have been trying acupunture for the past two weeks and i am concerned whether or not the needles would flare the RSD symptoms and the spread as some of the needles were quite painful. It helped with my neck and shoulder pains and not much difference for my other pains.
Anyone tries the herbal medicine and what is your outcome?